SiblingS'perceptionS in AutiSm Spectrum DiSorDer compAreD with

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Clinical Neuropsychiatry (2016) 13, 2, 10-16

Siblings’ perceptions in Autism Spectrum Disorder compared with Intellectual Disability and Typical Development Graziella Trubia, Serafino Buono, Simonetta Panerai, Marinella Zingale, Alessia Passanisi, Concetta Pirrone, Santo Di Nuovo

Abstract Objective: Differences between the self-image of persons with typical development and the image they have of their brother or sister with disabilities have been hypothesized in literature, but no specific patterns have been detected with reference to intellectual disability associated or not with Autism Spectrum Disorder (ASD). The aim of the study was to address this specific issue. Method: Two Semantic Differentials on self-image vs brother/sister’s image were administered to 93 individuals with typical development divided into three groups, matched by age, according to the sibling’s condition: Autism with Intellectual Disability, Intellectual Disability without Autism, Typical Development. Severity of impairment and levels of adaptation of disabled brothers/sisters were also taken into account. Results and conclusions: Siblings of individuals with disability perceived the disabled brother/sister as less active and less emotionally stable than themselves, but not demonstrating any significant difference in showing affects and feelings. In future research, specific behaviors associated with ASD need to be controlled in order to better address the differences between the aforementioned groups. Key words: siblings, autism spectrum disorder, intellectual disability, self-perception Declaration of interest: nothing to declare

Graziella Trubia1, Serafino Buono1, Simonetta Panerai1, Marinella Zingale1, Alessia Passanisi2, Concetta Pirrone3, Santo Di Nuovo1,3 1 Oasi Institute for Research on Mental Retardation and Brain Ageing, Troina (EN) – Italy 2 Kore University, Enna 3 University of Catania Corresponding author Dr. Alessia Passanisi, PhD Kore University of Enna E-mail: [email protected] Phone: (+39)0957644477 / Mobile: (+39)3472461121

Introduction In recent decades, researchers and clinicians have focused on the adjustment, problems and coping strategies of siblings of children with Autism Spectrum Disorder (ASD). Literature shows that the experiences of life and the kind of relationship between siblings when one child has ASD may determine different outcomes, varying from the enrichment of human values to definitely pathological signs, passing through adaptive intermediate stages which result more or less successful (Orsmond and Seltzer 2000, Kaminsky and Dewey 2001, Pilowsky et al. 2003, Scheuer 2005, Constantino et al. 2006, Pilowsky et al. 2007, Toth et al. 2007, Hodapp and Urbano 2007, Orsmond and Seltzer 2007, Neely-Barnes and Graff 2011, Hastings and Petalas 2014). Theories on family systems point out that the psychosocial adjustment of both parents and siblings can be influenced, directly or indirectly, by the presence of a child with autism (Cox and Paley 1997). According to several studies, the presence of a brother or a sister with ASD has negative effects on siblings (Marciano and Scheuer 2005, Orsmond and Seltzer 2009, Yoder 10

et al. 2009). Some studies have found more behavioral and emotional problems, higher levels of anxiety, and lower pro-social skills compared to control groups (Fisman et al. 1996, Fisman et al. 2000, Hastings 2003, Verte’ et al. 2003, Constantino et al. 2006, Giallo and Gavidia-Payne  2006, Ross and Cuskelly  2006). Not every scholar agrees that the presence of individuals with ASD in the family leads inevitably to maladaptive outcomes. Having a brother or a sister with autism can be stressful but at the same time rewarding (Squillaci and Lanners 2005, Benson and Karlof 2008, Walton and Ingersoll 2015). Moreover, the literature shows that the siblings of people with autism, display different and peculiar reactions compared to those of the siblings of people with other kinds of disabilities (Orsmond and Seltzer 2007, Hastings and Petalas 2014). Marciano and Scheuer (2005) investigated the quality of life of siblings of individuals with autism, by comparing its effects in a control group with language disorder. The results showed a lower quality of life among the siblings of subjects with autism. Vieira and Fernandes (2013) studied the quality of life in siblings of children with ASD using the World Health Organization Quality of Life-BREF (WHOQOLSubmitted May 2015, accepted April 2016 © 2016 Giovanni Fioriti Editore s.r.l.

Siblings’ perceptions in Autism Spectrum Disorder compared with Intellectual Disability and Typical Development

BREF) questionnaire. Further research has also studied the relationship between siblings of people with autism and people with Down Syndrome. The results indicated that the relationships established with brothers or sisters who have autism are characterized by lower intimacy and prosocial behaviors (Kaminsky and Dewey 2001). In another study, the authors examined the psychosocial adjustment in siblings of children with autism by comparing it to the one in siblings of children with Down syndrome and with typically development. They analyzed the relationship between feelings of loneliness, social support, psychosocial adjustment, influence of gender and family size in order to understand whether these factors affected psychosocial adaptation. The results revealed differences in the three groups. Siblings of children with ASD experienced low levels of loneliness and received more social support (for example by peers). Large family size appears to facilitate healthy adjustment in siblings of children with autism (Kaminsky and Dewey 2002, Mandleco and Mason Webb 2015). Other authors have reported higher levels of social competence and self-concept, and higher levels of acceptance and warmth in social relations among siblings of persons with autism compared to the control groups (Fisman et al. 1996, Verte’ et al. 2003). Orsmond and Seltzer (2007) reviewed literature on the siblings of people with ASD, from childhood to adulthood, focusing on their welfare. The authors conclude that, during childhood, the siblings have an atypical development in the domain of social communication, whereas, during adolescence, they experience both positive and negative aspects of their fraternal relationship. Furthermore, there is some evidence that siblings of children with ASD may be prone to increased risks during the development of social adaptation and consequent behavioral problems. A study by Bagenholm and Gillberg (1991) noted no major differences in self-concept between siblings of individuals with ASD compared with both siblings of people with typical development and with intellectual disabilities; nevertheless, siblings of people with disabilities, especially with autism, appeared more concerned about their future development and showed behavioral problems with peers. Studies currently available in literature still have a nuanced picture of the impact of autism on siblings and cannot be considered exhaustive. Frequently, all the increased attention of the family focuses on the difficulties encountered in the education of the autistic child, and takes away attention from the other children who, once grown up and become of adult age, should often assume the role of caregiver (Heller and Arnold 2010, Burke et al. 2012, Burke et al. 2015). The consideration of these aspects, grounded on evidencebased studies, could help to determine appropriate treatment guidelines useful for increasing the quality of life in families where a member is diagnosed as ASD (Passanisi and Di Nuovo 2015).

Objective This study aims to explore, in groups of normal individuals, the perception of themselves and their brothers/sisters with ASD and / or intellectual disability of different degrees, by comparing the same perceptions in siblings of individuals with typical development (TD). In particular, despite the contrasting evidence on this topic accumulated so far, we expected significant differences not only between siblings of individuals Clinical Neuropsychiatry (2016) 13, 2

with TD and siblings of subjects with disability in general, but also among the group with pathologically affected brothers or sisters, i.e. between siblings of a brother or a sister with ASD and siblings of individuals with only intellectual disability (ID).

Method Participants The sample consisted of 93 individuals with TD, divided into three groups, matched by chronological age: The first group was composed of 31 individuals with a mean age of 21 years (range: 12-42), sisters (n=17) and brothers (n=14) of persons with ASD associated with ID. The second group consisted of 31 individuals, mean age 23 years (range: 13-42), sisters (n=15) and brothers (n=16) of persons with ID but without ASD. Both these groups were composed of siblings of persons with disability (31 for each group, F= 29, M=33; mean age 19, range 5-44), that went to the Institute for Research on Mental Retardation and Brain Ageing “Oasi Maria SS” (Troina) for the services of diagnosis, psycho-educational training and rehabilitation cycles. For both groups, the level of ID of the disabled brothers/sisters (either mild, moderate, or severe) had been diagnosed by the specialized équipe of the Institution, using the ICD-10 (World Health Organization 1993) criteria, based on intellective test (i.e., Leiter International Performance Scale – LIPS: Leiter 1979) and adaptation test (i.e., Vineland Adaptive Behavior Scales - VABS: Sparrow et al. 2005). The diagnosis of ASD was made by the specialized équipe of the Institution, using to the pertinent ICD-10 criteria (World Health Organization 1993) and according to the results of the Autism Diagnostic Observation Schedule (ADOS, Lord et al., 1999). The third group was formed by 31 individuals (mean age 22 years, range: 10-35), 20 sisters and 11 brothers of persons with TD having mean age 22 (F=19, M=12, range 9-43).

Measures All participants were administered two Semantic Differentials (SD) in order to both evaluate differences in some dimensions of the Self-image and the image they had of their brother/sister. The SD, derived by the psycholinguistic studies of Osgood et al. (1957), refers to the ‘connotative’ use of language, consisting in the associated or secondary meaning of a word or an expression in addition to its literal meaning as defined by the context (Hampton et al. 2011). Based on the relevance of non- cognitive aspects, Osgood et al. (1975) defined connotative language as source of ‘affective meanings’. Therefore, SD appears to be a useful instrument for evaluating differences in self and other perceptions, more effective for this purpose than using explicit questionnaires. Previous psychometric analyses on SD as instrument for measuring self-perception have confirmed its reliability and factorial validity (e.g. Cogliser and Schriesheim 1994, Piotrowski and Dunham 1984, Sherry and Piotrowski 1986, Zhikun and Fungfai 2008). The SD used in our study consisted of 36 opposite qualifiers through which participants had to evaluate the Self-image and the image of their brother/sister on a 7-point scale (e.g., strong… weak; calm… agitated; 11

Graziella Trubia et al.

tender… hard; efficient… inefficient). The procedures to generate the 36 couples of qualifiers constituting the questionnaire are described in Di Nuovo and Magnano (2013). The factor analysis showed three principal factors, named Energy, Positive affect, and Emotional stability (i.e., three out of the “big five factors”) and the total scores for each subscale corresponding to the factors have a good reliability: in the preliminary study Cronbach’s alpha was 0.80 for the 1st, 0.79 for the 2nd and 0.87 for the 3rd factor. Moreover, a confirmatory analysis was computed to verify the factorial structure;

Procedure The tests were administered by psychologists trained in psychometric assessment, in the Institute where the brothers/sisters with disability were assessed and (for TD participants) in public schools or professional courses of the same town where the Institute is located. At the Institute for Research on Mental Retardation and Brain Ageing an Ethics Committee evaluates the acceptability of the studies planned to be performed. Prior to the participation to the study, all participants gave a written informed consent.

Table 1. SD factors scores in the subgroups of the sample (ASD, ID, TD), reporting the participants’ perceptions of themselves and of the brother/sister

Participants’ evaluation of themselves

ASD n=31 M SE

ID n=31 M SE



TD n=31 M SE


p (F)

Energy (E) Positive Affect (A)

5.59 5.41

.11 .08

5.82 5.41

.13 .11

5.70 5.32

.14 .08

0.41 0.74

Emotional stability (S)








Participants’ evaluation of their brother/sister Energy (E) Positive Affect (A)

4.79 4.82

.18 .15

4.37 4.84

.21 .11

5.63* 4.97

.15 .18